Friday, December 11, 2009

Micah Heart

Micah has a heart defect, Atrial Septal Defect, ASD of moderate size. Today when I changed his diaper before bed (and he was quite crabby at 6 earlier than normal) his legs had a slight off ness to the color, not pink, not blue, but not the color of baby legs. So I'll be calling the Heart Doctor tomorrow to take a look.

Wednesday, December 9, 2009

New Sitter

I interviewed a new sitter on Friday, and she seemed great over the phone interview, used to run her own daycare, loves children. Loves taking them out of the house, getting them outside to play.

She started on Monday, and they've been going out. She's taken them to 2 different malls in two days. Yeh!

Wednesday, December 2, 2009

The past 2 months or so....

I've only posted pictures, usually this happens when I'm having trouble processing what's been going on, or I'm struggling with things. Micah is more mobile and more demanding and William's been on roller coaster feeding problems, and Tommy wants attention too. All summed up it means not enough hand, and people to take care of all 3 kiddos. William doesn't eat as frequently as a newborn, but takes just as long to feed in time as a newborn. Slowness is the key, as if you push him too much he will gag and throw it all back up.

End of August we were 16lbs, 29 inches and got our feeding tube, intake for MDCP program, and waited to get help. MDCP is a process that's for sure, September I received the call we were approved for medical need for the program, and October 13th we did our overnight stay, and were on our way on the program, we had our intake with nursing the next day, and then I was promised the nurse would be there, and then one family emergency after excuse after excuse, and we never saw the nurse again. We had a few fill ins over the weeks we were with the agency, but they couldn't find us a nurse. We had a nurse for the weekend we needed for the cranial classes, and we setup switching to CDS attendant care. CDS is consumer directed services, it means I can hire grandparents, or anyone I find to care for William, (anyone but me and my husband that is). Then our attendant starts November 23rd. Our babysitter, has been just as overwhelmed as myself, with trying so patently different options on feeding William, this bottle, or that bottle, or this spoon or that one. Seems he's caught a cold and can't eat due to the mucous factor, and the feeling of that down his throat, he can't swallow food without gagging, so we end up on a week or so of tube feedings, and finally see our doctor to get a decongestant, and she can't prescribe one because it's not safe for under 2. He even gags on just mucous and throws up at random times. Then suddenly it's gone and he can eat everything he's suppose to during the day, and the attendant is able to feed him. We even begin to consider weaning down the night feeds so he will take more liquid during the day, but suddenly the congestion is back he won't eat for a day, and the feeding pump messes up that night and he gets next to nothing. And then no food again Monday, so Monday he spikes a fever just 101, so I have to give him fluids, we drop the tube, and then feed him dinner and drop it again for bed time. I set him up with a bag full. He was a slow eater during the day, but in the evening he even wanted to eat dinner with the family and had a bowl he ASKED FOR of pot roast potatoes and carrots. He did so well with it we called Grandma to brag. He finished up the night drinking an 8 oz bottle all by himself, while standing in Daddy's lap, yes he wanted to drink standing up. Yes there's a normal 21 month old in that body. One who wants to run and jump with his brothers, and tell grandma stories on the phone, one who wants to eat food with the rest of the family. Last weight check Wed before Thanksgiving he was 20lbs 10oz 32 inches. We're making our way onto the charts.

Anyway when our attendant starts our babysitter is out with a family emergency, and the attendant fills in for her; I find out friday after thanksgiving that our sitter won't be back, and we are interviewing new babysitters hoping to have one start soon.


I'm really loving having my tree up early. We put the tree up Thanksgiving day, and I recruited those here at my house to help. It was the best thing I've done, it feels so good to have it up and ready to go, and to enjoy it for 15 extra days than I usually get to. It's just perfect this year. I placed it in the front window for the first time in this house. I've always wanted to have a beautiful tree in the window, and now I do. I love it both inside and out. The tree sing beautiful Christmas carols as the kids stair in wonder. The there is the constant sound of the command "no touch", or "out". Micah stairs in amazement at the different ornaments and points out all the cars and trucks and trains with great emotion and wonder at the new objects his first Christmas he remembers. Tommy wants to touch all the motion ornaments, and push the buttons, and make the train go.

Tuesday, December 1, 2009

Some by Lydia

Just sometimes wishes I could quit, just for a day, not so I would miss out on all the special moments, the smiles, the trying so hard, but so just one day it wouldn't be a constant struggle to do simple things. Still searching for a new babysitter, but slightly jealous that the old one could just say one day I'm not going back, I don't want to struggle with feeding him anymore. I'm done. This is too hard.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."